Consumer Guide Promotes Personal Health Records

American Health Information Management Association's educational booklet complements government drive to get people to create and use PHRs.

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The American Health Information Management Association (AHIMA) has issued a guide to help consumers understand how they can access their medical records and what they can do with them. The guide, which explains personal health records (PHRs) and patient portals in consumer-friendly language, arrives at a time when the federal government is pressing healthcare providers and electronic health record (EHR) vendors to make it easier for consumers to obtain their medical information.

Posted on AHIMA's myPHR.com website, "Understanding Your Medical Record" is intended as a resource for consumers who are interested in maintaining their own PHRs. Among other things, the guide sets forth what is included in medical records, why these records are important, how to obtain them, how to use them to talk to your doctor, how to submit corrections if they contain errors, and how to file a complaint if you believe your privacy has been violated.

Another section of the guide defines personal health records and explains why they can be useful to consumers in managing their health and collaborating with healthcare providers. It emphasizes that PHRs can help consumers overcome the fragmentation of the healthcare system by keeping their records from multiple providers in one place.

AHIMA announced the guide at the recent Consumer Health Summit, facilitated by the Department of Health and Human Services' office of the national coordinator for health information technology (ONC). This is the same event in which government officials touted the success of the Blue Button campaign and urged EHR vendors to include in their software the Blue Button feature, which allows consumers to download their medical records in an unadorned ASCII format. More than 1 million people have downloaded their records using the Blue Button, which was developed in 2010 by the Department of Veterans Affairs (VA).

About a year ago, McKesson's RelayHealth subsidiary--responding to a challenge from the ONC--created an application that allows consumers to use the Blue Button to download records from non-VA providers. Since then, a number of private-sector organizations have committed to providing Blue Button downloads of patient medical records, including Kaiser Permanente, McKesson, Microsoft HealthVault, Aetna, and United HealthGroup. The Department of Defense (DoD) and the Centers for Medicare and Medicaid Services (CMS) also offer the Blue Button to their constituencies.

Meanwhile, the government's recently finalized Meaningful Use stage 2 rules include two measures related to patient access to their records. Eligible professionals must provide timely online access to their medical information to more than 50% of patients seen during their Meaningful Use reporting period. In addition, they must ensure that 5% of the patients seen in that period view or download their medical information or transmit it to a third party.

Up to now, consumers have not eagerly sought their medical records, and the percentage of people who actively use PHRs is under 10%. At the summit, Lygeia Ricciardi, acting director of ONC's Office of Consumer eHealth, reportedly said many consumers are simply unaware they can ask for their medical records.

Julie Dooling, director of health information management solutions for AHIMA, told InformationWeek Healthcare, "As the technology gets better and as more people start to adopt PHRs, [downloading of records] will become more prevalent."

Will the growing availability of clinical data online and provider incentives to share that data with patients via patient portals increase PHR use? "It could certainly help jump start a patient's PHR," Dooling replied, adding that patients themselves decide which data to include in their PHRs and who has access to it.

Another important question is whether the average consumer can understand much of the information in his medical record. While Dooling admits that the sheer volume of data may be a barrier for some people, she said consumers can help overcome that problem by asking only for pertinent records, such as all their lab results for the past five years or information about a certain health condition.

What happens if people just don't comprehend what's in their records? Dooling suggested they go over it with their physician. If it's difficult to reach their physician outside of a scheduled office visit, she said, some healthcare organizations have consumer advocates or health information management professionals who are assigned to explain medical records to patients.

PHRs have to be fully integrated with every large EHR vendor, pharmacy, and payer to truly take off. As a patient, it's great that I can access all my data from my doctor but what is truly valuable is to have all my information feeding into one place. It needs to be there when I need it, not just because I decided to download it and upload it somewhere else. Patients don't want to have to work that much just to do something that should have been done a long time ago.Jay SimmonsInformation Week Contributor